Friday, July 28, 2017

Dear Lord. Please answer quickly.

Dear Lord,
As I prepare to spend yet another night in the intensive care unit, I pray You send Your warm arms to surround me with strength, courage and sleep. I am so tired--so tired of struggling to breathe, so tired of coughing, so tired of feeling as though I cannot breathe...so tired. Lord, I know You know what ails my body. I know You can restore anyone to any health.

Please guide me in the way I should go. I so desperately want to proclaim Your glory and teach Your word to those around me. But, it is becoming nearly impossible to speak when my resting rate of respiration is 45-60 breaths per minute. It is also growing harder and harder to read and understand Your word from lack of sleep.

Lord, please provide comfort to my family. Please help them as they endure my seemingly endless medical dramas.

Lord, please send comfort and guidance my way. Please, Lord, answer quickly.

Your loving servant. Shabbat Shalom!

Thursday, July 27, 2017

You should write a book!

For over a decade, I have been sharing my life experiences with friends and family mostly via email and now via this blog. Over and over again, people have told me, "You should write a book!" Taking this to heart, I started keeping a diary in 2008. I wrote sporadically for a couple years until my health declined to such a state that writing was too difficult. Then, I stopped writing for several years.

Last summer, I learned a very dear friend of mine passed away. She and I shared a very similar health journey. We both were diagnosed with Postural Orthostatic Tachycardia Syndrome. And then we both continued to have a decline in health. First my GI tract was severely affected, then hers. Then she developed respiratory failure, and now I have it too. I met Milly through her YouTube channel. She posted videos about once a week. It was such a comfort to listen to her videos. Milly was a strong Christian and saw God in every situation.

Upon learning of Milly's death, I felt a strong drive to continue the legacy Milly started--I wanted to share with people from around the world my life, in which I try hard to see God's glory in all circumstances. Being constantly challenged by my health, it can be so easy to whine and complain about my health struggles. However, God has shown me time and time again, it is the small, every day challenges in which He often shows His glory...and if we are not paying attention, we can miss so many miracles.

So back to writing a book: I have no desire to write a book. My only wish is to inspire people to see God in their every day lives. For now, writing blog posts seems to be the best format to accomplish this mission. If anyone desires to ever publish anything I write, they may. However, my one request is for my name not to be used. My name and life are not important. I only wish for people to look to God for their strength and salvation.

Monday, July 24, 2017

The mad dash to the door!

This morning, I was lazily lying in bed, reading the Bible and enjoying the beautiful morning sunshine. My mom popped into my room to tell me she was going to lunch with the neighbors. She then started laughing when she saw me with disheveled hair and still in my pajamas and said, "Oh, I should tell you, the guy from the DME company is coming. He said he would be here in an hour to an hour and a half from when he called." I had heard the phone ring and thought, the guy called almost an hour ago! I picked up the phone next to my bed. According to the caller ID, the guy called at 11:03. It was now 11:45!

I frantically put on my compression stockings and tried to get ready in a hurry. I throw on some pants and shoes. I went to the bathroom and washed my face. I was having a hard time breathing due to mucus which builds up in my trach overnight. I tried coughing and cleaning out the top part of my trach. I felt a little bit better, but I still was having trouble breathing. So, I took out the inner cannula for my tracheostomy and put in a clean inner cannula. I went to my closet to find a shirt to put on. I selected a shirt. I then had to disconnect from my ventilator to put the shirt on over my head. "Ding, Dong!!!" "Oh no! The guy from the DME is here. It hasn't been an hour, yet, since he called! I am on the other side of the house very far from the front door. I haven't brushed my teeth or combed my hair! I am topless and am disconnected from my ventilator!"

I frantically grab my shirt, start wheeling my wheelchair toward the front door and kick my ventilator cart with my feet. The DME guy is knocking at the door. "Oh, don't leave!" I think to myself. "I am coming!" Right before I open the door, I throw on my shirt and connect my ventilator back up. When I open the door, I am gasping for breath, and my heart is racing. The DME guy seems alarmed I am so short of breath. "Let me look at your ventilator. You should not be this short of breath." The guy adjusts the ventilator settings and tells me I should feel better soon. I am too tired and too embarrassed to tell him about my mad dash to the door. No, I let him think my ventilator settings needed adjusting.

Wednesday, July 19, 2017

Pray for my mom

One of the most important people in my life is my mom. She has driven me to countless doctor's appointments, stayed too many nights in make-shift beds in hospital rooms, given me encouragement and fought many battles with me to get medical treatment.

Today, I unintentionally eased dropped on my mom's conversation with a family friend. My heart broke as my mom talked about my health. My mom seemed so sad and hopeless. My mom thought for sure my health would improve this year. But on the contrary, I have become progressively sicker. My mom expressed hope that perhaps my body was now having a relapse and soon I would be feeling better. My mom then very reluctantly admitted, perhaps this was just a continuation of my disease...an option she does not want to accept.

So, if you are inclined to praying, keep my mom in your prayers. Her mom had the same illness I have and suffered many years. My grandmother has since gone to be with the Lord, which has been very hard on my mom. My mom, too, has the same illness. Thankfully, my mom's illness has stayed pretty constant as long as she does not have some other condition hindering her health--car accidents, E. coli infections, slipping and falling head first backwards on pavement, etc. As strong as my mom is, my health struggles have taken a tremendous toll on her. With little else to offer, I appreciate any prayers you could send her way. God bless.

Monday, July 17, 2017

Another adventure, another day for God to bestow abundant blessings

Since getting a trach, every day seems to be a new adventure. The other day, I was having trouble breathing and coughing a lot. I had an appointment scheduled to see my cardiologist. I hoped he could tell me if my symptoms were anything serious. Upon seeing the doctor, I was amazed at how concerned the doctor was about my coughing and shortness of breath. After examining my lungs, the cardiologist asked me who my pulmonologist was. He immediately pulled out his mobile phone and called my pulmonologist. (I have the feeling my cardiologist knows my pulmonologist because the cardiologist called the pulmonologist's personal mobile phone (and not his office number).) The two doctors chatted briefly. When the cardiologist got off the phone, he asked me which hospital I wanted to go to. My pulmonologist wanted me to go to the emergency department. The cardiologist said the pulmonologist would get all the orders together and have them waiting for me at the emergency department.

Upon leaving the doctor's office, I went home. I had made soup and other food before going to the doctor. It was too hot to put in the fridge before my appointment. Although the cardiologist did not say I was going to be admitted to the hospital, I had a feeling a hospital stay was in my future. I did not want all my food to spoil. Moreover, I was very tired from going to the doctor. I needed time to decide if I was going to go to the hospital. Although I was grateful my cardiologist called my pulmonologist, I was also very angry. Now my pulmonologist knew I was sick. I see that doctor quite frequently. If I did not show up at the emergency department, my pulmonologist would be very angry with me for disobeying his instructions. Reluctantly, I resolved to go to the hospital.

When I arrived at the emergency department (ED), I was shocked to see no one in the waiting room. Immediately the woman at the desk helped me, and I was taken immediately back to triage. The triage nurse was quite concerned about my condition. I was quickly taken back and given a room. Things moved very fast. I had a chest x-ray and multiple blood draws done within a half hour of arriving. During this whole time, I was becoming very agitated. I did not want to be back at the hospital. Moreover, it was Shabbat. Every week, I patiently wait for Friday evening. I then eagerly go to bed and watch the evening Shabbat services. The Shabbat music soothes my soul and calms my breathing. Watching the evening services is absolutely my favorite part of every week! Although I did have my iPad with me, I was unable to watch the live streaming video of the services because people were constantly in and out of my room. I wanted to cry. I did not want to be here and now my Shabbat was ruined too!

When the ED doctor came in, he explained my pulmonologist had talked with the ED doctor earlier in the day. Although there had been a shift change, this new ED doctor had been filled in by the previous ED doctor on my case. The doctor said my pulmonologist wanted me admitted to the hospital. Thankfully, the ED doctor was very chatty. We quickly discovered I went to college very near where he used to live. In fact, his daughter was competing that very day at a track competition at my alma mater! This comforted my soul for a while.

About three hours after arriving at the ED, I was wheeled up to the ICU. When I arrived in my room, I was nearly crying. After spending so much time here after my tracheostomy surgery, this was the very last place I wanted to be! (It was amusing to have almost everyone working in the ICU stop and say, "Hi!")  In my despair and doing everything possible to suppress the tears which were pressing hard against my eyelids, trying to escape down my cheeks, I opened my Bible. As I read the Book of James, I suddenly knew God had been hearing all my pleas and prayers throughout the day. "My brethren, count it all joy when you fall into various trials; knowing this, that the trying of your faith develops patience" (James 1:2-3).

As if a tremendous burden had been lifted off my shoulders, I suddenly stopped being sad and started seeing all God's abundant blessings. There was no wait to get in to the ED. My pulmonologist had left detailed orders for my case which greatly expedited my transfer to the ICU and my treatment plan. I was back in the caring hands of so many talented medical personnel who already were familiar with my medical history. The ED doctor and I shared a common place of residence. Yes, God was showering me with abundant blessings all day long, but I had been in a foul mood to appreciate His abundant kindnesses. Thankfully, reading His word helped me see His great mercies and allowed me to glorify Him.

Wednesday, July 12, 2017

The honey bees come for the Honey Queen

Once upon a time, in a far away land, a young damsel entered a competition. At the completion of the competition she received the highest honor, being crowned the Honey Queen. She traveled throughout the land promoting honey bees and the honey industry. At the end of her reign, she quietly crowned her successor and returned back to her normal life.

Many years later, the Honey Queen and her handsome king set off on a grand expedition to a magical frontier. Their young princess remained at home to tend the garden and guard the family's abode from unwanted visitors.

One day, the princess was roaming the house. Suddenly as she passed the laundry room, she heard a buzzing sound. Upon looking into the room, she saw about ten bees swarming around the window. "Oh, dear!" she exclaimed. "I wonder how the bees got inside the house. All the windows and doors are closed." The princess promptly closed the laundry room door and stuffed a blanket in the gap between the bottom of the door and the floor. The princess decided she needed some fresh air and ventured outside.

Upon entering the patio, she heard a deafening buzzing sound. Looking up, she saw a huge swarm of thousands of bees on the side of the house. "Oh no! A bees hive! I was just outside yesterday and did not see any bees. I wonder how the bees formed a nest so quickly." Unnerved by the intense buzzing sound, the princess quickly watered the queen's plants and went back inside. Being quite fatigued, the princess retired to her resting chamber.

Several hours later, the princess's tummy was growling. "I think I will journey to the kitchen to enjoy a lovely supper." Upon leaving her resting chamber, the princess was overwhelmed with a buzzing sound. A quick look at the dining room windows revealed about 20 bees! The princess continued her journey to the kitchen. Upon arriving in the kitchen, the buzzing sound seemed as though it was coming from every direction. The princess explored the house. Upon arriving at the bathroom, she discovered about 100 bees covering the windows. She immediately closed the bathroom door. Upon arriving at the front entrance, the entry door was covered in hundreds perhaps thousands of bees! Immediately, the princess retrieved her wireless wand and called her lady-in-waiting. "Michelle! Come quick! There are bees in the house!" Michelle agreed to come over right away.

When Michelle arrived, she fearlessly entered the humble abode. Armed with a green can of Raid bug spray, she stoically battled the bees. She glided from room to room, spraying noxious chemicals on the precious honey bees. When the entire house was heavy with poisonous aerosol fumes, Michelle whisked princess away to her dwelling place. Tonight, princess and her lady-in-waiting where going to have an impromptu slumber party! Although princess was unsettled about the bee invasion, she was thrilled God was turning this topsy-turvy day into a grand adventure. (Who needs to travel to far away lands when this much excitement awaits at one's own home!?) Michelle graciously allowed princess to sleep in her bed. (How incredibly sweet and dear this gesture was!)

In the morning, Michelle drove princess back to her home. Armed with more Raid, Michelle again glided from room to room, killing more bees. She then vacuumed up the thousandss of dead bees and washed the bug spray off the windows and mopped the floors. With much gratitude, princess thanked her lady-in-waiting from her assistance and for rescuing the princess from such a perilous situation. The lady-in-waiting departed. The rest of the day, the princess slept and tried to recover from the dramatic events from the previous 24 hours. During the next several days, about 100 more bees invaded the humble abode and met an early death. For about one week, a handful of unwanted bees continued to invade the house. Thankfully, they soon were defeated and stopped flying in. Princess was very excited and was thanking God for no more bees in the home.

The honey bees came for the Honey Queen. Unfortunately, the queen was not home, and princess did not want to entertain a swarm of bees until the queen's return. As much as it was disheartening to slaughter so many honey bees, princes was very grateful that no one was stung and no damage occurred due to the bee invasion. Praise "bee" to God!

Wednesday, July 5, 2017

On your mark! Get set! Knock, knock! The hospital bathroom game

Whilst hospitalized, using the bathroom is always a fun game to play. I have learned from previous hospital stays, it is best to plan your drinking (and subsequent bathroom usage) carefully. For example, mornings are always a rush of people in your room--doctors, nurses, housekeeping, food service, etc. If you want to guarantee an uninterrupted time in the bathroom, it is best to go to early. Once 7 a.m. comes, there is little hope of making it to and from the bathroom without someone coming into your room.

With all this said, today I felt the urge to go at 1 p.m. The doctors had already come to my room, it was between nurses checking vital signs, and the lunch meal service had come and gone. I thought I was clear for bathroom usage. I slowly unhooked my blood pressure cuff, heart rate monitor and pulse oxygenation monitor. I then disconnected from my ventilator since the one at the hospital is not very portable. I carefully edged my way to the side of the bed. I untangled my IV line and slipped out of bed. Very cautiously, I made my way to the bathroom, pushing my IV pole. I get to the bathroom and am just about ready to turn on the light when, "Knock, knock!" The respiratory therapist enters my room. She wants to check the ventilator and look at my vital signs. I retrace my steps; get back in bed; hook back up the ventilator, blood pressure cuff, heart monitor and pulse oxygenation monitor. The respitratory therpatist notes all my numbers and then leaves.

After the therapist leaves, I again unhook all my monitors and ventilator and make my way back to the bathroom. I do my job and am in midst of pulling up my pants when, "Knock, knock!" The dietician is at my room door. I do not acknowledge her presence. She can see the bathroom light is on, and the bed is empty. She leaves. I wash my hands and make it back to bed. I slowly ease myself into bed, sitting at the edge of the bed. I hook my ventilator back up and enjoy a few quick breaths of air before, "Knock, knock!" The dietician is back in my room. I answer her questions. In a few minutes she leaves. I am just pushing myself up into bed when, "Knock, knock!" My nurse enters my room to check my temperature. He takes my tempature. I then hook back up all my monitors. The nurse looks at my vitals on the large monitor in my room. He then leaves.

I lie in bed, frantically breathing as my body gets rid of the carbon dioxide which built up in my body during the brief time I was off my ventilator. When I recover, I start laughing uncontrollably! In the afternoon, no one usually visits my room. But of course, when I had to go to the bathroom, an invisible alarm went off sending people to my room to play the bathroom game. On your mark! Get set! Knock, knock!

Monday, July 3, 2017

Another day, another night. Praying for answers.

As I gaze at my ventilator, I wonder if the respiration rate is accurate. Forty-four breaths per minute. Can that be right? I watch as my chest frantically rises and falls. Why is my breathing so fast? Breathing should be easy now that I have a trach and am on the assisted control ventilator settings. In, out, in, out, in, out. Over and over again my body fights; it races to get a quick gulp of air. I try to hold my breath. "Ok. I am tired. I need to rest. Hold your breath and slow down your breathing." I use as much energy and muscle control as I can muster. Holding breath, holding breath...suddenly my body breaks out into a frantic panic. 65...70...75...80...84 breaths per minute. My ventilator trips out and pauses. My respiratory muscles strain and fight to breathe against the paused ventilator. After a few minutes, my breathing and the ventilaor sync back up. Now my breathing is at 60-65 breaths per minute. For the next 90 minutes my breathing continues to be a frantic chaos of breaths. Finally, my breathing begins to settle back down. Soon, it is back in the 40's.

Despite my disdain for hospitals, I am again back in the intensive care unit. Tests have been run. Everything has come back negative. I use all my medical knowledge and ingenious Internet search phrases to look for possible answers to my breathing difficulties. Like my doctors, I, too, am at a loss. Another night I spend hooked up to monitors and machines. Another night of trying to figure out my medical mystery. Praying for answers. "Cast your burden upon the LORD, and He shall sustain you. He shall never suffer the righteous to be moved" (Psalm 55:22).